Let’s Change the Narrative!

Each day, I scour the news sources looking for the next “big thing” in the Dementia and Alzheimer’s World. Some days there are very interesting stories full of hope and promise and then there are days when the headlines lead you to believe the next “big thing” has been found, only to find the words, “hopefully” or “in the future” or “in the next 10 years” in the body of the article . . . you see where I’m going.

The thing I continuously see are people like me who are Living with Alzheimer’s and people who are Living with Other Dementia-Related Illnesses being referred to as Patients and/or Sufferers.

I’m not sure about you but I am NOT a PATIENT of any newspaper, magazine, documentary, news channel or TV host.
I also don’t SUFFER from my Alzheimer’s. I struggle.

Part of what I do when I’m advocating is to remind everyone that, although I have a disease that will, one day, contribute to my death, I also remind them that I am NOT anyone’s patient except for my Doctor. “XXX” is my Doctor and I am his/her patient. That’s it. No one else has the right to claim me as a patient. I find that to be highly insulting and it gets on my very last nerve.

When I, and others, are referred to as “SUFFERERS”, it also strikes a nerve. I will speak only for myself on this for I ‘m not sure if others feel like they are suffering. I don’t feel that way. Suffering means, “the state of undergoing pain, distress, or hardship.”  I can understand the hardship part from a financial point of view and on the days when I am in my fog, but I still don’t consider myself suffering.

If I offend anyone by saying this, I don’t mean to. I’m simply stating how I feel. There may be some folks out there who feel as if they are suffering. The only thing I can say to that is, each of us are individuals, and life is going to affect us in individual ways.

The focus right now on those of us Living with Alzheimer’s or other Dementia’s is “SEE ME, NOT MY DISEASE” or “PERSON CENTERED FOCUS.”
Person Centred Approach is about ensuring someone with a disability is at the center of decisions which relate to their life. What it boils down to is, who knows us better than US? Instead of making decisions for us or about us, why not include us in the conversation. Ask US what we think. Discuss options with us . Just treat us for who we are and that is human beings.

I know in the later stages, I will be unable to communicate my wishes as to what I would like or dislike. With that said, I already have an Advanced Healthcare Directive and Appointment of Agent as well as a Durable Power of Attorney. It was important to me to make sure I was making the decisions for my life. I did not want to put that responsibility on anyone else. As a side note, as long as I can still eat, there will be peanut butter, chocolate and of course there will be music.

My advice to anyone and everyone is to have these documents prepared. My advice is free and you, as an individual, can do with it what you like.

I’ve said many times, “This is NOT how I expected to spend my retirement but, it is what it is.” I try to be productive every day, BUT . . .
Sometimes I am, sometimes I’m not.
Sometimes I write, sometimes I watch Netflix.
Sometimes I just sit, look at photographs and listen to music.
Sometimes I go to Starbucks.
Sometimes I just sit and think.
Sometimes I just sit and cry,  but not for long.

I’ll admit, it’s a hard life, but I know there are others who have it worse so I don’t dwell in the darkness for long. I have loved ones who I can call day or night. I have friends, a lot fewer than what I once had (that’s a blog post for another day) that I can lean on when needed, and lastly, I have myself.

In my Alzheimer’s mind, I’m still me. I can still drive, I can still work, I can still fix technological things, I can still balance a checkbook. OK, I can’t physically do ANY of these things anymore, but that’s OK. I know what my limits are . . . most of the time.

At the end of the day when I lay my head on my pillow, I know I’m still me. I’m not everyone’s patient, I’m not suffering and I’m not the me I used to be but that’s OK. You see, I don’t worry about the things I wasn’t able to do today for when I wake up tomorrow morning, I won’t remember. I’ll just re-invent myself all over again, until the next day, and that’s OK with me.

Until next time,
PEACE!
B

WHY ME???

WHY ME???

When I started writing this blog post, I had a different topic in mind.
That topic was lost when I forgot the password for signing into this site. I then began the task of resetting the password but didn’t write it down each time I changed it. 
(yeah, I was under the assumption that I could “remember it.”) After the 4th ATTEMPT, I wrote it down and another topic, or rather a question, popped into my mind . . . WHY ME???

I think I’ve asked that question to myself, probably over a thousand times during my almost 57 years on this planet, but each time, I came up with a logical answer . . . 

For instance, “Why did I get punished” was a question I asked myself regularly during my childhood. My most common answers were . . .

“Talking during class time/church or any other place where I was NOT SUPPOSED to talk.”

“Arguing with my teacher/classmate or anyone else I disagreed with during a time when I was supposed to be quiet.”

“Not telling the truth” (I’m still not sure how I always got caught)

“And then the time I got punished for telling the truth and was not believed, so I lied and then got punished for lying.”

You see, my sister, my brothers and my childhood were nothing like the Brady Bunch. Instead of our Dad sitting us down and having a “teaching lesson-like conversation”, let’s just say we had a bit of an issue “sitting down” after our “conversation.” I think you get the picture.

As the years went by, I still questioned WHY anytime something didn’t make sense to me. I usually wouldn’t let go until either I was satisfied with the answer or the person to whom I was asking just gave up answering my questions and moved on.

So, yes, I was very inquisitive because I wanted to learn. I knew that everything happened for a reason and I wanted to know what that reason was.

Then, in 1998, my world changed. My niece, Mary, died from Cystic Fibrosis at the age of 22. I knew how she died for I was there by her side watching her, crying for her, singing to her, as she drew her last breath. My question was, “WHY HER?” I’m not saying I was wishing it upon someone else, I was just questioning, “WHY?”

She struggled all her life. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do.
She went through, not 1 but, 2 double lung transplants. She fought during all 22 years of her life.  

Mary passed away in October of 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which is in September. It was a huge surprise.

I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.

I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series.  Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.

During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.

We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.

The answer to the question, “WHY HER?” came to me this morning.
She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. Being she could still laugh through it all was also a valuable lesson. 

The same question arose again in the very late ’90’s when my Mother was diagnosed with Alzheimer’s Disease. I thought it was hard to take Mary’s Diagnosis. Nothing in this world could’ve prepared me for this. 

My question, again, was, “WHY HER?”

Here was a woman who was the closest thing to Snow White I could imagine. People even mentioned that she even sounded like Snow White when she sang.
She was a kind, loving woman who helped take care of Mary (who I just wrote about), her Father (who also had Alzheimer’s), her Mother (who was a paraplegic), her sister (who had brain cancer), my Dad (who, for those of you that knew him, was more than a handful), other friends and relatives, and not to mention 5 children who she had during the first 10 years of 60 years of marriage.

She did everything. She was June Cleaver and Carol Brady all rolled into one. She was an amazing Mother, loving and patient wife, dependable friend, phenomenal Southern cook, extraordinary singer and possessed so many other superb qualities.

Through her Alzheimer’s Journey, she almost never stopped smiling. Even when she could no longer speak, she would hum or “la-la-la” the words to a song to try and communicate. I think she did it with me to signify our bond for loving music. She was always trying to help and to not be a burden on anyone. If she had the ability to speak she would’ve apologized to everyone for needing assistance and care. That’s who she was.

She passed away in January 2015, only 2 1/2 Months after I was diagnosed with Alzheimer’s. It was an extremely hard time, to say the least, and brought up the question again . . . WHY HER?

Like Mary, that answer came to me through my Mother. She taught me how to live life trying not to burden those whom she loved the most while still staying true to herself through her love of music, her patience and her love of family and friends.

So . . . in looking at the lives of both Mary and my Mother, both of these wonderful, strong, beautiful women who lived their lives in the best way possible, have helped me in answering my, “WHY ME?” question. 

I truly believe Mary and my Mother used their strengths throughout their entire lives and really depended upon those strengths during the last days of their lives. It started me thinking about the strengths that I have that would/has already enabled me, so far, to get me through my Alzheimer’s Journey. I had to look back to one of the main reasons why I got into so much trouble during my early years . . . “TALKING!!!”

Talking is what I have done, and still do, to this day. (just ask my family and friends . . . lol) By using my voice, I’ve been able to speak to thousands of people, telling my story, dispelling the Stigma associated with Dementia-Related Illnesses, laughing at myself as I go deeper into the Alzheimer’s Forest, using my singing talents to bring back memories to others of days gone by.

So, looking at the lives of 2 incredible women, “Mary Estelle Tycer and Norma Mae LeBlanc,” who used their strengths to, unknowingly, teach us how to live our own lives by using our own inner strengths, I’ve finally been able to answer the question of “WHY ME?” 

Thank you, Mary and Mom . . . still teaching me after all these years.
I LOVE and MISS YOU BOTH!

Until Next Time . . .
PEACE!

B

So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?

First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???

  • I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
  • I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times
    by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape?  Did I fake remembering the 4 words I was told 5 minutes ago?
  • Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
  • I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?

BOGUS

WOW . . . if I was faking all this, I must be a pretty damn good faker to have come up with this diabolical plan. But wait, if I was actually faking it, wouldn’t that take someone who can think and remember what to do, day in and day out, so they could remember to keep “faking it?”

Could someone:

  • who has no clue what day it is
  • who cannot tell time on a non-digital watch
  • who has to have alerts on his phone to remind him to take his medicine, to eat and to bathe every day
  • who can’t remember, day to day, how to work a TV remote

Could someone who is Cognitively Impaired really carry out this plan?

Oh wait, I get it . . . I’m supposed to be curled up in a bed, not able to talk intelligently, not able to feed myself or go to the bathroom by myself, and not remember my wife and children. God forbid, should I be able to use a laptop to write blog posts that will hopefully bring awareness and education to people who don’t understand the in’s and out’s of Living with Alzheimer’s Disease that they only saw in their elderly parents and grandparents.

GEEEEZZZZ, I guess since I’m able to do all of these things, maybe all of those so called medical professionals, all 4 of them, plus their PA’s and NP’s, all with their Diplomas and Certificates and published articles are just full of shit!

Maybe they have a quota as to how many people they have to diagnose with a Dementia-Related Illness each month and they needed just one more to be awarded the monthly “Hey, You Diagnosed Some Poor Sucker with a Fatal Illness Who Wasn’t  Really Sick” award, and I was the lucky one.
Maybe they (all 4 Dr’s, PA’s and NP’s) deliberately lied to me just to turn my life and my family’s life inside out and upside down, all the while so they can collect a $35 co-pay so they have some spending money for lunch!
Wow, did they pull the wool over my eyes, or what?

FAKE

I’ve been open and honest about my Alzheimer’s life since the day I was diagnosed. When I talk about it, I don’t do it to make people feel sorry for me, to have pity on me or to call attention to myself.
If I did that, I’d be dishonoring the lives of my Grandfather, my Mother and Father, or my wife’s Grandmother.
If I did that, I’d be making a mockery of every person in the world who has Alzheimer’s Disease, whether they be over or under the age of 65, individuals who I now call a friend.
If I did that, I’d be purposely putting my wife and children through sheer, underserving, inexcusable, wretched hell.

Well, I don’t have the capability to do something like that. 

I’m not saying I’m perfect for I have many faults and I’ve made many mistakes in my life that I’ve paid dearly for, but I’m not evil!

So, for those of you who want to continue thinking I’m faking my illness, please go right ahead. You have the right to think and say what you want. You can’t hurt me anymore than what I’ve already been. We don’t talk or see each other so it’s not like I’m missing out on anything.

Since receiving my “diagnosis” I’ve become non-existent to you, well, except to be called a fake, not to my face of course.

So please, continue your path in life and feel good about yourself. It must be nice to sit upon your throne and pass judgment upon those of us, you feel, are just skating through life.

Yeah, I’m skating alright. Of course, I can no longer skate on my own (guess I’m faking that too) but I’ve got Shannon (and her family), Asheton, Bradley, Linda and so many others holding me up both physically and emotionally when I need it. Unfortunately, I’ve been needing their assistance more and more lately but they are always there. I know I’m fortunate to have them, and yes, I know who YOU are, and I NEVER take it for granted.

They understand what I go through every day. They see and talk to me on good days, bad days and all days in between, because they get it and I am so thankful for that.

Feel free to call them and ask them if I’m “faking it”.
Better yet, just call Shannon. She would just loooooove to talk to some of you.
Just be prepared though, she’s kinda protective of me.

Until Next Time . . .

PEACE,
B

 

The Angry Side of Alzheimer’s

The Angry Side of Alzheimer’s

One of the things that makes me angry about having Alzheimer’s Disease are people that DO NOT WANT TO UNDERSTAND that I, and people like me, still know what’s going on around them and can still carry on an intelligent conversation. Sure, the words may not flow as evenly and smoothly as they did before, the mind may not allow us to remember the conversation an hour or a day or a week from now, but we still enjoy being in the moment.

Before my diagnosis, I had friends . . . lots of friends, or so I thought. These people who I thought were friends kept in contact with me, returned a phone call whether or not I left a message, would interact me with through Social Media or in person. Where in the hell are these people now? I have no idea. Don’t get me wrong, I’m not mad that these people don’t talk to me anymore, I mad for the reason they don’t talk to me anymore. There’s a difference , and in addition, I feel sorry for them.

stigma-tmpwimi-wb-squared1People that don’t understand something or have misconceptions of something tend to make their own decisions about that something. It’s called STIGMATIZATION!
(WOW, the Alzheimer’s Guy knows a big word and can use it properly in a sentence. Imagine that?)
When it comes to Alzheimer’s Stigma, the Alzheimer’s Association does a great job of describing it and how to deal with it here : Alzheimer’s Stigma @alz.org

Here are a couple of examples of stigma the Alzheimer’s Association uses:
A diagnosis may test friendships. Friends may refuse to believe your diagnosis or withdraw from your life, leaving a feeling of abandonment or isolation.
The first part of this I believe to be true.
The 2nd part about isolation and abandonment is not. My wife and kids, as well as the friends that have stuck with me, and some family members, have not allowed me to feel abandoned and/or isolated. I am thankful for their continued presence in my life.
I can’t say the same for others.

– Relationships with family (and friends) may change. Family members (and friends) may not want to talk about the disease, perceive you as having little or no quality of life, or may avoid interacting with you.
This is the biggest issue. I really feel that most of my friends just don’t know how to deal with my disease, or just don’t want to deal with me having the disease, so they just don’t deal with me at all.
This was one of the main reasons I created a Facebook page. I still post “some Alzheimer’s related things” on my profile but my Facebook page is strictly for Alzheimer’s related information. Due to lack of engagement on my Facebook profile, I felt people would rather read about family and funny things instead of the reality of Alzheimer’s.
In case you’re interested, my page is: My Alzheimer’s Journey

For more examples and information on Alzheimer’s Stigma, go to: Alzheimer’s Stigma @alz.org

All of this is glaringly evident to me since I no longer work and since I no longer drive. It’s not like I stay at home and do nothing. I spend a lot of my time researching and Advocating for Alzheimer’s. For me, my Advocacy has turned out to be the best job I have ever had without getting paid and has introduced me to some pretty wonderful people, both with and without Alzheimer’s.

You see, I’ve learned to overcome the Alzheimer’s Stigma. It took me a little while and because I still retain my long-term memories, I still miss the friends I “used to have” but it hasn’t stopped me from living. I’m still active on Social Media, I still make phone calls and leave messages, I still wait for the phone to ring from the people that say they will call me back.
Does the fact that my phone goes days without ringing  make me feel sorry for myself? No!
Does it piss me off? Sometimes, but all I can say to that is, it’s their loss.

My life is simple now. It’s not what I envisioned my retirement to be but just the same, it’s simple. I live with 3 amazing people who love me and take care of me, and I have my little furry friend who is always by my side. He’s also an excellent listener.

wpid-screenshot_2015-01-11-09-58-30-1
I know the world would be a much better place in which to live if there were no racism, no inequality in the workplace, no unnecessary violence, and if we could all gather as a world and join hands every once in while and sing Kum-Ba-Yah.
Until that happens, just do me favor . . . just because someone, a friend or not, has a disease, do not abandon or isolate that person. There is a great chance if the tables were turned, that person would stick by your side.

PEACE,
B